Courage is subjective

*Contains a swear or two.

Not long ago, I got involved in a small debate on Facebook over the nominees of the Arthur Ashe Courage Award. I generally don’t like to debate much of anything as I’ve always been the kind of kid who could see all sides of an argument as long as they’re well thought out and argued without cutting everyone else to shreds. I guess I’m a lover, not a fighter. And I hate unnecessary conflict.

Anyway, a friend of mine was stating that Caitlyn Jenner should receive this award because of the courage it took for her to come out as a woman. I agree that it took courage, but I’m also skeptical of anything that those affiliated with the Kardashian clan does because they seem to be in it for the attention and reality tv show deals. They appear to be a 100% “drama added for viewing pleasure” type of people. My opinion. Nevertheless, I understood and accepted my friend’s position, but made it known that Lauren Hill had my support because of her battle with terminal brain cancer, yet maintaining her love of basketball and playing until her battle-scarred body refused to let her.

“But what has she done that’s so courageous?” This was the line of questioning that my friend took regarding Lauren Hill. I decided not to say much else other than I know what I know from dealing with my son’s cancer diagnosis and how he faced it with a courage that I’ve never seen before, every single time.

As most of you know, we recently learned that Ben is facing Neuroblastoma for the fifth time. It’s a bit more aggressive than it has been in the past, and it’s in a few more sites than it has been in his last couple of relapses, so we’re freaking terrified. Add in the fact that his treatment team is throwing around phrases like “quality of life” and encouraging us to make “bucket lists” and making the most of our time together, well, those types of statements ratchets up the anxiety a bit more.

After getting off the phone with the information that Ben had relapsed, Matt and I went upstairs to give him the news. Oh yeah, due to financial issues, I’ve moved back in to the house in hopes of alleviating some of the financial burdens. I have to admit, everything is going very smoothly. I believe we’ve both grown up a lot and are giving the extra effort to function as a team – like parents are supposed to. Too bad so many of us forget how to do that, even those who aren’t faced with a child’s life-threatening illness. Regardless, that’s what I told Ben as I held his hands and cried about a fourth relapse, that we will function as a team. A single tear slid down his cheek. He was just as shocked as we were.

I don’t know why we’re so surprised, Ben has chronic disease after all. They told us it would come back. And it did. Yet, it left us feeling like we had been punched harder than the last time we received this news. I guess it’s something you can’t ever get used to. And living in that kind of shadow is pretty fucking brave. At least, it is to me. Add in the fact that he’s been doing this since he was two years old yet still finds the courage to fight every single time… he’s not only brave, he’s the epitome of a warrior.

Such news is always hard to give. After we had our “cuddle puddle” of everyone surrounding Ben and simply holding him, at some point we had to leave him alone to process. His light was on late. I kept creeping upstairs all night to check on him. It seemed he had retreated to his online friends and video games, so he was coping as best as he could.

The following day, he jokingly told his dad that he wanted a closed casket and at the end of the service, “Pop Goes the Weasel” should be played.

The next day, I held him as he cried. He stated, “I’m going to die before I get to do anything with my life.” I didn’t say a word. I just held him as his tears soaked my shirt. I mean, what can you say to that? I can’t tell him no, he won’t die. But how do I encourage him to maintain hope? How do I show him the options he has to fight this monster without scaring the crap out of him? How does he pick up that pen to sign away the next year of his life to chemo, hair loss treatment, mouth sores, vomiting, and the very real possibility that this will be his last battle because his body is getting so tired?

Courage.

I don’t want to get out of bed to face today because tomorrow is going to suck. I want to stay in my dream world where monsters are chasing me through a haunted house instead of waking up to the fact that a real monster is holding my child hostage. Yet he sits with that monster every day, knowing all he can do is stay as strong as possible and maintain small shreds of hope that he’ll survive this.

As I was holding him, sobs wracking his small frame, I kissed his soft hair again and again, knowing that the future weeks will take that beautiful red hair away from me. It will take away his strength. It will probably make him smaller yet through an inability to eat. And they want us to make a list of fun things to do. Hurry up. Have fun now. Because what’s coming isn’t fun. What’s coming might be the end.

Yes, signing that paper as a 14-year-old, taking away what shouldn’t be a privilege – the right to be a kid – shows tremendous courage.

Fucking cancer. I hate you. I hate what you’re doing to my son. And as my tears flowed, dripping into his beautiful red hair, I told my son that I would take his disease from him in a minute. I would gladly pay that ransom and let it destroy me instead. Because I simply don’t have the courage to watch him die.

And he said, “Mom, I simply wouldn’t allow that.”

Nothing subjective about that. That is 100% courage.

 

A gift of hope

This has been a most trying week for your good friend, Sarah. (Oh no, there she goes referring to herself in third person again – a sure sign that she’s lost her mind.) We’ve had insurance issues that cannot get resolved, life issues that keep mounting, and, of course, the “usual” rigor of putting Ben through another round grueling therapy meant to save his life. Besides the last issue, which will always take precedence over the other “crap,” the other stuff can simply piss off. For as of this morning, I’ve lost another dear friend to the evil and dreaded cancer.

I met John Enterline 13 years ago while I was working as an HR manager for CorporateOne Federal Credit Union in Columbus, Ohio. It was the last “official job” I held before my two-year-old son was diagnosed with stage IV Neuroblastoma. Despite being in the position for only nine months, my co-workers remain an important part of my family to this day. They came to Ben’s bedside during those first critical weeks. They called, sent emails, provided food, visited, cried with and pledged their undying support to me and my family. It was one of the only places I’ve ever worked that had a true love and respect for their employees. Their support has never wavered – even after Ben’s 11 years of relapse after relapse.

While I cannot think of a single co-worker without anything but loving kindness, John stands out above the rest. I knew him to be a fairly quiet man; a constant observer. He had a kind heart, and we would often chat about boring life stuff in the kitchen each morning as I was making my instant grits. (Don’t judge… I’m 1/2 Southern, which is why I like grits, and 1/2 Northern, which is why they’re allowed to be instant grits.) Regardless, I enjoyed my morning chats with John. We had a love of photography in common, so that was often a point of discussion.

When Ben was diagnosed with cancer, John presented me with a small gift-wrapped box. As he placed it in my hands, he clasped his hands around mine and said “Please give this gift to Ben when he turns 18.” Ben was two years old at the time, and 18 seemed so far away. Tears streamed down my cheeks because I felt it was highly unlikely that my son was going to see his 18th birthday. At least, according to his doctors. I knew that Ben had less than a 20% chance of long-term survival. John knew that, too. And while I was buying what the doctors were telling me – that I would lose my son well before he had the chance to turn 18 – John chose to hold on to hope.

I promised John that I would. I took the small box, gift-wrapped in a shiny, vibrant green foil, and put it away.

Over the years I’ve moved it from place to place, from Ohio to Colorado and wherever else my road has taken me over the last decade. I’ve let Ben hold the package, knowing that he has this box to look forward to opening when he turns 18. I let John know a couple of years ago that Ben was really looking forward to that day, and he said “Awwww, I hope he’s not too excited. The gift really isn’t that big of a deal.” I immediately disagreed and told him that it didn’t matter what was inside. The contents were insignificant. The love surrounding it was the important part and Ben was the sort of kiddo who would fully appreciate that.

Then, my friend John learned he had cancer himself. Shortly after his diagnosis, he reached out to me. He told me that he was in awe of Ben – now more than ever – because John was experiencing first hand the horrors of cancer therapy. He wondered how a child could be subjected to the same harsh therapies that adults were receiving. And the fact that Ben had been in treatment for over 11 years was stunning to him. He told me in a note that “it’s just not fair” and that he was still praying for Ben. Always one to think of others, that friend of mine.

Not too long ago, I received a message from him stating “Ben is my hero!!! You can tell Ben that I’ve been praying for him and he has my love and admiration.” Shortly after receiving this message, my CorporateOne family let me know that he was struggling. Two days ago, my friend told me that he had lost consciousness. His once fidgety movements had gone still. He most likely only had hours left.

I thought hard about John as I was walking with Ben through mid-town Manhattan yesterday. We’ve just finished up the last of this particular study and are now in the stressful moments of awaiting the scanning process, praying that there’s no cancer hiding in my son’s body. I took Ben’s hand and let him know that the friend who had given him that shiny green package so many years ago was getting ready to leave us. He closed his eyes. I have no idea what my child was thinking at that time, but I’m sure he was sending John all the loving energy he could muster.

As we carried on with our journey toward the Ronald McDonald House, I looked toward the East River and saw the most magnificent sunset reflected in a mirrored building. I thought about how much John would have liked that… I bet he would have had his camera at the ready, wanting to capture it and share it with everyone else. I smiled through the heartache, hoping he felt my love surrounding him.

I woke up this morning to a text message stating that John had left us around 6:45 this morning with his nephew by his side. He left behind many adoring friends and family, a collection of stunning photographs he’s taken, kind words to a heart-broken mother begging for her child’s life to be spared…

And a shiny green box filled with hope for my son.

All my love to my CorporateOne Family, John’s family and friends. I’m so sorry for this devastating loss.

Common Courtesy

A couple of weeks ago, I was coming out of Target and had the privilege of watching an oversized SUV as it ran into the front of my car. I stopped in the middle of the street, my arms outstretched in the universal pose of “what the frick was that?” as the couple exited from their grand vehicle, not giving my poor car another glance. Granted, it was a hit to my bumper and only pushed the car back slightly, but it was still a hit to my car. As they passed by me, oblivious, I asked them if they gave a crap that they just hit my car. The man looked at me and said “it didn’t beep. My car always beeps before it hits something, and it didn’t beep.” I’m sure my facial features twisted incredulously as I asked “okay, you didn’t hear it, but did you feel it?” His companion piped up that she felt it, but he wouldn’t answer.

I was dumbfounded for about two seconds, contemplating how many things this man must hit that he relies simply on auditory tones to alert him to when he’s being a poor driver. I understand that this feature is something manufacturers are installing in newer models, but since I haven’t owned a model later than 2004, my main luxury is a CD player. I’m out of the loop when it comes to super cool options. Regardless, I was overwhelmed by the lack of concern: no beep, no hit. He did walk back over to my car with me to assess if there was any damage. There wasn’t. He apologized. I got in my car and found myself repeating “no beep, no hit,” and cackled with the high pitched bursts of laughter of someone who might be teetering a bit too close to the edge.

When did we become so dulled to our surroundings? We have an app for everything now that alerts as to what’s going on in our world. We can set alarms, find a place to eat, schedule appointments, store loads of information in our phones – the list of what these miracles of technology can do is extensive. Even in NYC, the busiest place I’ve ever experienced, everyone walking down the street is glued to their phones. I wonder when Apple will install an app called “you’re gonna run into that person if you don’t look up from your phone” which will emit a long, obnoxious beep before you crash into another human being.

Everyone in my immediate circle is guilty. We all love our phones. We read, play games, check news, etc. They are awesome! I once forgot my phone at home for an entire day and I felt lost. My life seemed to be empty without my little electronic nugget of support. But what are we losing in translation? By keeping our eyes trained on the little electronic blob that probably causes cancer, we miss out on so much. We’re becoming insensitive. And I think we’re angrier. Sure, we have the whole world electronically at our finger tips, but we’re ignoring life.

While email and blogging and facebook have been instrumental in keeping people updated on Ben, it comes with a certain price. It seems that everyone has an opinion and people feel safe when they’re hiding behind their keyboards. It gives them the ability to say really horrible and hurtful things. Sometimes from a simple misunderstanding, but other times because people can simply be turds. I was recently reading an article about a Texan hiking a technical climb in Colorado. He slipped and fell quite a ways and he died. The comments on the article ranged from “I’m so sorry for his family” (appropriate) to “That’s what a Texan gets when he comes to Colorado.” (Super inappropriate)

Who on earth finds that sort of statement okay to put out there? Now, I have a weird sense of humor, and sometimes my meaning is lost in translation, but a statement like that is simply cruel. It reminds me of a time when I first started blogging and someone posted, “I hope your son dies.” I stared at that comment for a long time, wondering what kind of person would say such a thing. Thankfully, comments like that are few and far between, but they still happen. One dude castigated me after Ben’s MIBG story aired on the news… he was insistent that weed was the answer and I was too ignorant and “scared of weed” to know that I could save my son’s life with marijuana. Now, anyone who knows me well enough knows my stance is in high support of medical marijuana, but it is not the answer for Ben. I know that. His doctors know that. This tool who was so sure of my ignorance doesn’t know that. The internet has created a lot of “self-made experts,” but it hasn’t taught them any freaking manners. And while I take all of their comments with a grain of salt, I have to understand that opening our lives up to the general public like this puts us at risk of running into some big time crazies. I know I need a thicker skin.

But people also need to learn some flipping manners instead of simply waiting for their app to tell them what to do next.

Last week, my beautiful daughter started middle school. I wrote her a letter in hopes of giving her a little extra support during these tumultuous years.

My darling Madeline,

Today is your first day of middle school! What an adventure! I remember my first day of middle school like it was 36 years ago – because it was – and I’ve been trying to forget it ever since.

I couldn’t wait to wear my brand new yellow pants (hey, it was the early 80’s) and sport my super curly hair, thanks to the toxic home perm my mother had given me. Those home perms were very popular back in my day, and while I chose the picture of a young woman with beautiful waves as what I wanted my hair to look like, it turned out something like this:

Phil-Spector

 

It was my first real lesson in “Don’t try to be something you’re not.” Fortunately, my hair is inept at holding any sort of curl and I was back to myself in no time.

Don’t get me wrong, precious daughter. Middle school is VERY exciting. New teachers (seven of them!), changing classrooms, your own locker, new kids from different schools… it’s completely different from elementary school. The change is an amazing journey and will impact you for the rest of your life. You’ll make friends now that you’ll hopefully have long into your adult years. And the next major change you’ll make will be when you head off to college. I mean, high school is its own special experience, but the next major step will be trying this whole school thing while living on your own. Thankfully, we have a while until that happens, unless you go all Doogie Howser on me this year, open up a can of genius, and head off to university next year.

Regardless, this year will be amazing. And challenging. Because there’s this fun caveat that “the powers that be” like to throw at us during these years called “puberty.” It’s a hellish experience, but totally necessary in order to reach that all important milestone called “adulthood.” Don’t rush this process! Let it simply happen. It’s traumatic enough to let it occur naturally, so trying to force it is a really bad idea! Take your time when it comes to liking boys, wearing makeup, forgetting about your dolls, and withdrawing from your mother. Yes. Especially that last one. You can skip that one all together! I cherish the closeness we have. I know it will change in some ways, but I hope we can sail through these next few years with minimal issues between us.

Understand now that I only have your best interest at heart. I only want wonderful things for you and, as you mature, you’ll find what I think is wonderful and what you think is wonderful will vary greatly. Just know that I have had 36 years of extra time to process the information that you’re just now receiving. And I’m always right. Always.

Always. 🙂

Here are some things that I want you to know:

*Skip the drama. It’s never worth it. *Don’t worry about still enjoying your “American Girl” dolls. Chances are that the girls who publicly shun them still like to play with them in private. *Your body will change when it’s meant to. Just because so-and-so already got their period doesn’t mean there’s anything wrong with you… and you’ll find that once the novelty of that “first time” wears off, you’ll wish you never, ever got it in the first place. I will find you a copy of “Are You There, God? It’s Me, Margaret.” by early next week. This should be required reading for all adolescent girls. *Don’t rush finding a crush. Relationships are tough stuff – even as an adult – so focus on loving who you are first. *Someone will hurt you. It’s inevitable. But all you can do is be the best you can be, learn from it, and move on. *You will hurt someone. Hopefully, it’s not intentional, but it will happen. *Never compromise who you are: embrace that you’re deliciously quirky and accept that you’re sensitive. *Find a tribe who loves you just as you are. Trust me, they’re out there. *Don’t “follow the leader” because, at this age, they usually don’t know where they’re going, either. *Dream big but enjoy the daily grind of getting there. In other words, “enjoy the ride.” *Don’t try to be someone else. YOU ARE PERFECT AS YOU ARE!

I have absolutely adored having the last 11 years to watch you become the amazing person you are. You’ve always been a little ahead of the game because of the brutal reality of your brother’s illness, but I know it’s made you a very special young lady. You have a compassionate heart, which I believe will help you make the right kind of friends. People who will love and support you. It doesn’t mean that people won’t hurt you – and the realization that people you think are your friends can hurt you – is a tough lesson to learn. You already know that life isn’t fair. But, I think you have an amazing grasp on who you are as a person, and this will ultimately serve you well.

Oh, and one more thing: I’ve got your back. No matter what, I love you and am proud of you and think you’re AMAZING! I will embarrass you at times (remember where you get your quirkiness from!) but I will love you ALL THE TIME. You got this! And for the times you think you don’t, remember I’m right here. It will be hard for me to let those wings of yours unfold without trying to dry them off for you, but you can’t soar with me fussing over you all the time. I ask for your patience with me. I’m going through a transition, too.

And with tears in my eyes as I send you off on this new journey, know that I am proud of you. Excited for you. Scared for you, but know that you will succeed. Go, little bird. I’ll be waiting for your return with open arms.

Love,

Mom.

IMG_1319

International Cat Day

Last week sucked. And since I have nothing nice to say about it, I’ll talk about cats instead, since today is International Cat Day.

For the first half of my life, I considered myself to be a cat person. The first cat I remember having was a big black cat that my Grandma Sarah picked up from a yard sale. Grandma never could turn down a good yard sale, and I’m sure my mom was thrilled that Grandma found such a “bargain” for me. Anyway, I could carry this giant cat in any manner – like a baby, upside down, by the tail… it didn’t seem to care. Apparently, it had given up on life since it had been relegated to the bargain bin at a yard sale, and didn’t have an opinion on how I paid attention to it, as long as I was paying it some sort of attention. Unfortunately, I don’t remember if it was a male or female, and I cannot recall what we called the poor, dejected cat. And I’m not sure if it moved on from our world “naturally” or if it simply ran off to find its inner Qi. Regardless, I loved the cat dearly and considered myself to be a bonafide cat aficionado based on my experience with this cat.

The next cat I remember was a member of what I like to call our “Gone With The Wind” phase. GWTW was my mother’s favorite movie and she honored her fandom with the first in a long series of Siamese cats she named Rhett. Scarlett came soon after. When one would die (usually of Feline Leukemia), we’d replace it with another Siamese GWTW cast member. This was before we learned that feline leukemia was contagious and replacing them was essentially killing them.

So, when we found a stray Siamese wandering around, Mom adopted it and gave him the name “Ashley.” The GWTW character Ashley is probably my least favorite, I always thought of him as weak. But Ashley-the-Cat was a first class a-hole. He didn’t like anyone but my mother. And he especially didn’t appreciate his other “cast mates.” He felt he should be starring in a one-cat show. And on one fateful day, he took his disdain for the world out on me.

We had just come home from school. I was in second grade. I remember I was wearing my favorite yellow t-shirt. My sister, Cassi, was making a sandwich in the kitchen and I was sitting on the floor right next to the kitchen, directly beside an ironing board. My sister was grumbling at me about something… my needing to do chores or something of the sort. I was busy petting my kind Siamese cat, who was sitting next to me on the floor, but since I was listening to my sister, I failed to hear Ashley, perched on the ironing board, growling directly above my head. I noticed the hair on my kind kitty standing on end, probably bracing for the impending fight with Ashley. But since I was focused on what my sister was saying, I didn’t realize my dangerous situation before it was too late.

Ashley pounced to attack, but my face got in the way. He landed on my head with claws out, and, in what seemed like slow-motion torture, shredded me to pieces. I’m sure the whole incident was over in a matter of nanoseconds, but it seemed like a million years of tiny knives shredding my head into julienned strips. When the cat retreated, I sat stunned, my sister still grumbling about something in the kitchen. I stood up and walked to the kitchen door, beginning to cry, which caused my sister to whip around from her sandwich making. The look on her face was sheer horror. And the scream emanating from her assured me of what I already suspected: I was going to die.

I don’t remember the exact order of events, but I know Cassi called my mother at work to ask what to do. Mom worked downtown – over 25 miles away – so she wouldn’t make it home in time before I bled out. Ok, that’s probably a big embellishment, I probably wouldn’t have bled out, but I like to add a little fiction for dramatic purposes. 🙂 Cassi was told to wrap my head in a towel and take me to my neighbor, Jane’s house. Jane was the mother to a whole lot of boys, and dealing with blood was probably one of her specialties.

So, my sister searched for something to wrap my head in, but in her panic, ended up wrapping my head in a blanket. Now, I’m a second grader. And I was super tiny for my age. So, this little stick figure with a blanket wrapped around her head and blood everywhere had to be quite a site. My sister drug me out of the house by my arm and we ran across the yard to Jane’s. Despite growing up in a tiny village, the street we lived on was well traveled. People stopped. And I told them all that I was dying as Cassi drug me across the yard, bloodied blanket trailing behind my tiny frame.

Jane wasn’t impressed with my wounds a poured a bottle of ST-37, which is still sold online today as a “soothing antiseptic solution” (a review I do NOT agree with,) all over my head. By the time I stopped hyperventilating, mom was home and took me to the ER.

Clumps of my hair were missing. A scratch around my right eye was dangerously close to making me a One-Eyed Sarah. The favorite yellow t-shirt? Destroyed. The cat? Retired. Or punted to the Rainbow Bridge. Not sure what happened to Ashley. Except that he’s been reincarnated and has attacked me repeatedly over the years. Yes, I’ve been sent to the ER/hospitalized three times thanks to cat attacks. And when I shaved my head this past March for St. Baldrick’s, I was reminded of the old war wounds I received thanks to that little bastard of a cat.

And this is why I’m now a dog person.

*I don’t think I’ve ever said so, but THANK YOU, sissy, for taking care of me that day. I know you hate when I tell this story, but you did a good job! I love you!

I’m not really a b*tch, I just play one in your life.

I have a BIG apology to make. The Southwest Airlines counter at Denver International Airport got a giant taste of crazy on Sunday thanks to my multi-car emotional pile-up. Thankfully, there weren’t any casualties, but my insurance rates are definitely going to go up.

Here’s what went down: As many of you know, I’m upset with Memorial Sloan Kettering Hospital. They have been poor at communicating with us about treatment plans and what’s next for Ben. Whenever we’ve seen his doctor, he sticks his head in and says something like “I know we need to chat…” and then we don’t see him for the remainder of the visit. This was to be Ben’s fourth cycle of Hu3F8 with no end in sight and I’ve been anxiously awaiting answers. We were supposed to come to NYC for Ben’s fourth round two weeks ago, but, thanks to the vacation plans of our social worker, it didn’t happen.

I filed that frustration away until a coordinator called to ask us if we’d consider pushing Ben’s therapy out until August because they were overbooked with kids. First of all, that’s very sad to hear that there’s such an influx of neuroblastoma kiddos. It makes me sick. But secondly, they’d already pushed us out because of the scheduling snafu from the week prior, AND, pushing Ben out one more week would be in violation of the study agreement (needs to have these therapies within eight weeks of each other) so I raised a ruckus. I was told that they could “skirt around” that violation if we would consent to moving and I said no. Well, I said some other things, too, but the message I was trying to get across was no. Matt reminded me to “not shoot the messenger,” but since the people in charge weren’t communicating with us, what option did I have? I didn’t shoot her, but I did stomp on her foot a little. Actually, it was more like a forceful tap.

So, we moved forward with making plans to leave last Sunday. Sloan Kettering forwarded information on how to get a free round-trip voucher on Southwest. Hooray! This was awesome news to me. I called the number they gave me to set up use of the one-time-only “green pass.” The person assisting me was amazingly kind and booked us non-stop from Denver to LaGuardia. He told me to pick up the voucher at the front desk when we checked in. Easy Peasy!

I didn’t pack until the night before our trip. This is my usual program, mostly because I despise doing laundry and I’m a hideous procrastinator. Regardless, it helps me focus on packing instead of brooding about treatment. Matt and Madeline dropped us off at the airport Sunday morning and we went inside to check in and get our vouchers.

Ben was already tired (and, I’m sure, anxious about a week of therapy.) But I was in a pretty good mood. The line was atrocious to check in, so I pointed Ben in the direction of some chairs. A nice Southwest agent overheard me talking to Ben and directed me to the front of the massive line. Awesome! Everything was going wonderfully. I was called forward by my “new friend” Sherrin, and said, “we’re here to pick up our green pass for travel.” And she said, “you’re supposed to get those from the hospital.” And I said, “but I live in Denver and the hospital is in New York and all they sent me was this email.” I showed it to her. She wasn’t impressed. She said she couldn’t help me and my entire body tensed as the crazy started to flow. I said, “but your reservations agent told me I’d pick them up here at the counter!” And she said, “Well, I wasn’t on the phone and I can’t be held accountable for what he told you.” The words shot out of my mouth like machine gun ammo, fast and loud. “You. Need. To. Find. Someone. To. Help. Me. NOW!” She gave me “the look” that every customer service agent dealing with someone they’re annoyed with has down pat, which promptly sent me over the edge. Then came the tears. And the story. With hyperventilation. “mysonhasbeenbattlingcancerfor11yearsandwehavetotraveltogethistherapy!” Her face softened a bit and she retreated to get a manager. He was mean, though, and kept shouting at me to show him the email I received. By that time I was in hysterics. One of the other agents was crying, too. She came over to hold my hand, which made her an instant ally. So, I asked her if she could get this guy to stop being a dick to me. Yes, I said those words. And he threw my phone on the counter and said “I don’t have to help you at all.” Then they all went into a secret room in the back for about 20 minutes, the long line of people undoubtedly cursing me under their breath.

Of course, this is a Sunday, and nobody was at the hospital who could help us. I called Matt. Mostly just to vent, because, in all honestly, what could he do? I checked on Ben, who was melting down, too. That made me feel like total crap. He came over and hugged me. I told him that everything would be okay and that we would get it figured out. We just had to go with the flow. Then he said: “I don’t understand why that hospital doesn’t care about me.” He’s never around when we’re on the phone with them so he doesn’t know all the behind the scenes stuff. Yes, he knows when plans change and why they change, but if he feels like they’re not treating him properly, then there’s a huge problem.

Sherrin came out of the back and the manager dude left without giving me a kiss – or throat punch – goodbye. She said “we’ll get you on this flight but you MUST get that voucher from the hospital.” I leapt over the baggage scale and hugged her with all my might. She said “I lost my son in a car accident a few years ago. I saw the terror in your eyes of not being able to get your son what he needs.” I softly repeated how sorry I was as she held me tight. We’re all fighting some sort of battle, my friends. We need to be gentle with one another.

Then a wonderful man with a wheelchair swooped Ben up and whisked us past the horrendous line at security. The drug dog sniffed me briefly but didn’t make a fuss… all I had was oxycodone and a variety of anti-anxiety meds, which, despite being prescribed to Ben, I did think about snagging one or two for myself.

And since then, we’ve had a challenge each day. Small by comparison, but challenges nonetheless. I got the precious vouchers from someone other than our social worker. She blamed someone else for the snafu, who blamed Matt for not letting them know when we were traveling, who called bullsh*t on the whole thing, because they KNEW when we’d be traveling. I think they’re servicing too many children because the ball is getting dropped. A LOT.

So, let’s preserve my mental health by finding a cure for Neuroblastoma sometime soon. Because it is all about me.

And my sincerest, deepest apologies to Southwest Airlines for being a crazy b*tch.

 

Through my daughter’s eyes

Starting with a wee rant: I’m super size mad with Ben’s hospital in NYC. They are really messing with my quest for inner peace. I know I have control over my own emotions, but they keep throwing crow bars at my happiness and I’m getting tired of dodging them. Grrrrr.

So, here’s the rundown: Ben was due to start his next round of antibody therapy July 13th. With Madeline on summer break I thought it would be nice to take her along with us, and to add to the fun, I scheduled a last minute, pre-NYC mini-vaca to the Great State of Ohio to visit family and friends. I only booked the tickets to Ohio because we were waiting on the approval from our social worker in NYC to travel on from Columbus to NYC for therapy. It’s a pain in the butt, but there’s a reason why. See, there’s a whole legion of people who have abused the system over the years, folks using the Ronald McDonald House and travel privileges for their own vacation time instead of care for their sick child, so every tiny detail has to go through our social worker and she’s in charge of approving when we travel. Once we got the lab results that Ben was medically cleared for another round, our social worker needed to let the Ronald and a charity we work with to get flights know that we were cleared to come. However, she went on vacation without completing the task. It’s no secret that my patience with this NYC facility is near the “hot liquid magma shooting out of my head” level, so we told them to reschedule Ben for the end of July instead. More Grrrr, but at least we have some extra time to get a solid travel plan in place.

Anyway, while we were in Ohio, I celebrated my 47th birthday. I’ve never really stressed out about numbers before – each birthday is undoubtedly a gift – but 47 struck me with a feeling of “Holy crap, I’m on the downward slide to 50.” And, for whatever reason, I’ve decided that by the age of 50, people should really have their sh*t together. Here I am, a well-educated, yet unemployed individual who has no security for her future. No retirement plan. No investments. No savings. No adult stuff. If I were to die, my children would inherit nothing.

I’m 47 and I’m worth nothing. Honestly, I tried to set myself up for a much better life through getting a solid education, but even if I could hold a “real job” with the rigors of a sporadic schedule hanging over my head, I wouldn’t want to. Because despite the lack of money, my life is very rich.

I know my primary job is to care for Ben throughout his medical journey. And I know I kick ass at that. My dad honored me with the ultimate compliment recently. He said that he believes Ben has done so well for so long because of my love and support over the past 11 years. I’ve been steadfast in letting Ben know that I’m with him, no matter what. And, I’ll be honest, there have been times that I didn’t want to. I was scared. I was exhausted. But I knew that Ben was more scared and more exhausted, and my job as his mother was to give him every single bit of me. I’m pretty confident that I did just that.

Now, with Madeline, it hasn’t been as consistent. I’ve missed first days of school and parties and field days and performances. She’s had to rely on the kindness of others to help her when Ben has to travel. I feel like I’ve let her down time and again throughout her 11 years on this planet. So, when she gave me my birthday present – a jar she decorated and filled with 10 slips of paper listing things she loves about me – well, I felt the Universe give me a giant hug, letting me know that we’re all on the right track. Here’s what she had to say:

*You are such an amazing, strong person. *I love to snuggle with you. *I don’t think you know how funny you are. *You always know what to do in sad situations. *You’re very unique, and I love it. *I think you’re a great caretaker. *You always know what to say. *I love to hear about your future books. *I am so proud to call you my mom. *Just, thank you for being you.

Of course, as I’m reading each validation, the tears fell. They cleansed my weary soul of all the nonsense I think I’ve been doing wrong. My inner voice is dumb. It’s busy telling me all the times that I’ve failed. I think I’m going to listen to Madeline’s voice for a while. Because, in her eyes, I’m giving her what she needs.

And that’s priceless.

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A day of labor

*I’ve written about a lot of this before, but it won’t hurt you to read it again. Enjoy.

It was a Thursday morning when my water officially broke, one of the super disgusting line items that goes along with the “Miracle of Birth.” I was terrified and excited all at the same time – much like riding a roller coaster – except this ride would end with a beautiful baby in my arms instead of a mild case of whiplash. Although, my birthing experience probably had a little bit of that, too.

I was a newbie at the whole baby delivering gig, so I didn’t really have a good grip on what my body was doing. After exiting the shower on the morning of June 19, 2001, some water hit the floor that wasn’t shower related. I was officially due on June 22, but I’d heard a vicious rumor somewhere that full-term babies sometimes come a little bit before their due date. Oh, how I was ready to be a member of that club! My feet were so swollen. My back was miserable. And I was anxious to meet the little nugget who simply HAD to be ready for more living space by this point.

I called my OB/GYN office to explain what I thought had happened and they told me to go straight to the hospital. I called my boss on the way in to let him know I wouldn’t be coming to work because I was in labor, and (swear to God) he asked if I’d be in the next day. He had been very vocal for my entire pregnancy in letting me know what an inconvenience this would be for him. Knowing what we know now about Ben’s journey, I’m so thankful that he was only inconvenienced until Ben was about six months old. This cancer nonsense would have really put him in a bind. But enough about him.

We checked in to the hospital. They put my name on the big white board as a patient. I disrobed and got comfy in the bed, ready to meet my little person, only to be told by my nurse that I was wrong. My water hadn’t broke at all. It must have been the mucus plug that hit the floor (another disgusting line item in the “Miracle of Birth” experience.) I was unceremoniously discharged and did the waddle of shame down the hall as a nurse erased my name from the white board. There would be no baby coming today. And, my boss got his wish. I went to work the next day.

Since I was due on the 22nd, my OB wanted to see me on the 21st. I arrived for my appointment, and like every other pregnant woman in the world, I had to pee. STAT! I asked for the urine sample cup from the receptionist and headed off to do my business. As I was positioning myself over the toilet with the cup in hand to collect my sample, water exploded everywhere. Having my confidence shaken a couple of days before, I decided to not share with the staff what I thought had just happened. God forbid I be wrong about this two times in a row. They might decide that I’m completely inept and had absolutely no business trying to raise a child. So, I said nothing. I left my “sample” on the back of the toilet, cleaned up as best as I could, and went back to the waiting room.

I told Matt what I thought had happened. He said excitedly, “Go tell someone!” and I’m all like “No way! You!” and he’s all like, “No! You!” In a room full of very pregnant, semi-cranky expectant mothers, we were having a back and forth diatribe reminiscent of a couple of bickering siblings. We didn’t have to argue for long, because the nurse came out holding my sample and asking for “Sarah.” I looked at Matt with a bit of horror, like I was going to get a detention or something. I tentatively raised my hand, knowing I was about to get castigated. She asked, “What did you just leave in this cup?” All the other women in the classroom were raising their hands as if to say “I know! I know! Pick me! I know what that is!” And I answered her with the inflection of a question, “My water just broke?” She sternly nodded her head and told me to head straight for the hospital. All the other women groaned as if to say, “No fair. She doesn’t even know what she’s doing. Why does she get to go first?”

The next 26 hours were horrifying. We’ll just fast forward through all the scary bits of extreme high blood pressure and distressed baby stuff and head straight for the actual miracle: at 11:48 am on Friday, June 22, 2001, the young man who has so dramatically changed my life in wonderful ways was born.

Benjamin Harrison Brewer, you ARE a miracle, in every sense of the word. You arrived wearing a three-piece suit and holding a briefcase, ready for business. I’ve never known a more serious child. But that biting sense of sarcasm (that I’ll take hereditary credit for) and absolute ability to wow everyone with your beautiful manners, compassionate spirit, and aura of nothing but love, makes you such a remarkable young man. Not only am I proud to simply know you, but I’m over the moon to hold the status of being your mother. Never has there been a more rewarding or beautiful job.

For never planning to be a mother, I sure hit the jackpot in the kiddo department. Thank you, Ben, for teaching me about love. I learn more from you every single day, and I look forward to all the wonderful things you’ve yet to teach me.

I love you, my dear son. Happy birthday. mom-ben-iii

Summer Son

There’s an element of every season that I love, but if I had to choose, summer is probably my least favorite. I’m very sensitive to heat and while I love being ON the water (preferably in a small craft like a sailboat or a canoe) I don’t love the beach. I’ll take a snowy mountain peak any day.

And since I was born during the summer, I never got to have a birthday party in my classroom. This always irked me. When I found out that I was pregnant with Ben and had a due date of late June, the lack of a birthday party during the school year was one of the first things that crossed my mind. Priorities, I guess. I just wanted my unborn child to have a better life than I’d had. A birthday party during the school year is a child’s basic right. Ask any summer baby. They’ll all agree.

The impending onset of this summer has had me in a jumble of nerves. In my daily meditations, I tried to explore why I was so anxious about this coming summer, other than the basic disdain for sunburns and heat strokes. With Ben’s quarterly scans usually hitting around the start of each season, I came to the realization that every single relapse he’s had has occurred during the summer months. He had emergency surgery on my 41st birthday, which resulted in his first relapse. His second relapse was right after his 12th birthday. And then his third relapse was just a year later, on July 4th, 2014. Three recent summers overshadowed by recurrent disease. I guess if I had to find a silver lining in all of that, at least we were in an air-conditioned facility for the hell he faced.

So, when these most recent scans rolled around last week, I was beside myself with anxiety. His treatment team has said “it’s not a matter of ‘if’ it comes back, it’s a matter of ‘when.'” Now, I take all of this with a grain of salt. Statistically speaking, Ben is a freaking miracle. I’ve learned (and have had to relearn time and again) to surrender to the information we’ve been given. There’s nothing I can do about it except for love my Ben with all I’ve got. I try hard to not worry all the time and I’ve been doing a pretty good job. But like any human being suffering from PTSD, triggers make those raw emotions rear their ugly head.

We’ve been through hell. The last thing we want is to go through it again and it’s unfortunate that we’ve been told the whole “when, not if” factoid. I desperately want to know everything that’s happening inside my son’s body, so I long for the scans, yet dread them at the same time, because they have the potential to break my heart all over again.

When we got the word last week that Ben had no evidence of disease, I cried in relief. And then I threw up. Twice. I had been walking around with all of this heaviness, setting myself up for the possibility of another relapse, and when it didn’t come, my adrenaline had nothing to do. I’m not complaining, just explaining the whole barfy thing.

Finally. We get to have a summer.

We’re going to enjoy every sunburn. Every heat stroke. Find lots of adventures, like going to the Sand Dunes. Perhaps take that vacation that Ben’s been aching to take? Ben will have his 14th birthday outside of the hospital (see his Facebook page “I love The Bean” for birthday details… all are welcome!) And Thursday, Ben and Mad are headed to Wapiyapi, the most amazing summer camp catering to our precious population.

And I’m going to simply breathe. It’s going to be a good summer, indeed.

 

 

Little Lambs

When I was a kid, I loved visiting old cemeteries and making grave marker rubbings using a brown piece of craft paper and an old crayon. I’m not sure why I’ve always been intrigued by visiting people who’ve passed from this realm, but I simply love the peaceful feel of an old cemetery. The headstones were so creative and ornate. And I especially loved that they marked the exact amount of time spent on this earth. If I were to die today, my stone would state:  Sarah H. Washburn, Aged 46 y, 10 m, 6 d.

Sometimes it would even specify how you died. Mine might state: Killed while interfering with a piece of scum berating her child during therapy (No kidding, this actually happened. Not the death part, but the scum/berating part. Gross.)

Regardless, I adore the fact that those old stones let people know exactly how long people existed in their earthly form. Nowadays, most stones make you do the math for yourself. Of that, I am not a fan. Math has never been my thing.

Anyway, the recent weird weather in Colorado thwarted our planned monthly adventure, so May’s trip was a repeat to Idaho Springs for a soak in the Indian Hot Springs. It was rainy, which is why our original plan was scrapped. Personally, I love a car trip in the rain as long as it’s not a torrential downpour, and with the kids distracted in the backseat with their electronic devices, they didn’t mind.

After our soak at the springs, we drove up near the entrance of Mt. Evans. It’s a lonely stretch of road – and absolutely gorgeous in the fall with all the golden aspens – but on this rainy day there wasn’t much to see. We pulled over at an old cemetery on the side of the road, intrigued as usual. The grounds were unkempt and the drive around the loop was nearly impassable as thoughts of bottoming out my car became a concern, but some of the markers were phenomenal. One was shaped like a log cabin. Another was still immaculately cared for despite their beloved being gone for well over 100 years. But as I looked around there were a tremendous amount of markers with little lambs on top: the traditional marker for a child.

As I stated earlier, the cause of death was sometimes mentioned: Typhoid fever. Diptheria. Cholera Infantum. Tuberculosis. A variety of Pox. Many of these tiny markers listed horrific diseases, many of which are now nearly extinct. Well, except the anti-vaxx community, who may be bringing them all back. Sorry. I think not vaccinating is a poor choice. Why on earth invite that sort of illness back into our world when it’s so preventable? If there was a surefire way to beat cancer, I’d be all over that in a heartbeat.

Don’t get me wrong, I can fully understand people wanting to stop giving their child something that might cause another challenging affliction – like autism – but is the risk of having your child die better? I mean, Ben goes through a tremendous amount of therapy that very well may end up killing him. It’s no secret that this very thing has happened to many other children we’ve known, dying from complications of therapy, and that totally sucks. But I know we’re helping to pave the way to a FUTURE for other children like him. I hate that he’s been a guinea pig of sorts, but what are our options? Plus, he’s still here. Despite his hearing loss. Despite his severely curved spine. Despite his “chemo brain” or lack of focus. Despite missing adult teeth and a shriveled kidney and short stature and a multitude of scars and all the pain he’s endured and the gazillions of treatments he’s had over the years. But if we found a cure for this, and people chose to turn their back on it because their child might have some developmental disabilities because of it? Well, that makes no sense to me. Honestly, I would be offended. My son’s life matters. He goes through what he does in hopes of not only saving his life, but to make others like him not have to fight so hard. He’s a true soldier in this fight against cancer.

I’m committed to his life. I want his years, months and days to amount to something. And it is. It has been. When we think his quality of years, months and days are wavering, then we might think otherwise. But I feel that’s a long time away. I know it is.

Children dying is nothing new. In fact, it was common to lose a child back before all the medical advances became readily available. And I know that if Ben were to have been afflicted with what he has today back at the turn of the century, he wouldn’t have lived for very long. Then again, I probably wouldn’t be here myself because of my own health ailments.

I didn’t mean for this to be an attack on anti-vaxxers, it just got me thinking about how fragile life is and how we should applaud what’s available to us, even when it’s not perfect. Every day of our lives matter.

Every single day.